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Charles, “Hello, guys. It’s my first vlog and I’m so excited that I don’t know where to start—
Hello, guys. My son suggested to me that the first scene should be very interesting. So I’d better describe what just happened. I returned from a clinic with Erik, my husband. There, I’d been told that the tumor in my brain increased in size— These are Erik’s hands you see on my shoulders. He didn’t mind me vlogging. Okay…”
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Charles, “So, guys, I was laying on the couch. Now you see me wheeling. I am a permanent wheelchair user. Erm… I point it out because some people who choose to move in a wheelchair can actually walk. They are called ambulatory wheelchair users.
I’m sorry I’ll cut it off during the montage. This topic popped into my mind because I actually had been accused of faking my disability a few times. I’m in politics. Politicians are brutal. They said I look good so I should be lying. Also, I’m attracted to people, so probably I decide to sit in a wheelchair for victimizing myself and catching the attention of the strong men and women who would want to care for me.”
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Charles. “About my brain tumor. I have a glioma. More specifically, it’s an astrocytoma. Scans have shown it in my brain, on the side, close to my right temple. I used to hold my fingers there. Usually, I massage my temple. But people think that I use my telepathy all the time. Funny.
By the way, my legs are paralyzed not because of the tumor. I’ve been paralyzed after a car accident before the symptoms of cancer started to show— Oh, hi, darling. Would you prepare pancakes for the kids? Can I help? Give me a kiss.”
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Charles, “Hello, guys. I’m really sorry for yesterday. My son Peter advised me that it’s better to begin my vlog on a positive note. But— I’m sorry about that. Yesterday, we were at the clinic, and my doctors said that the tumor has increased. They prescribed me treatment. It would work for three months and then— They would check on me and prescribe something else. If my body would be able to stand it— Khm. Hello, Jean. Hello, Kurt. It’s nice to meet you. Hello, everyone.
So, we are on Pride March, currently. Look at the view! We will move in the crowd and Erik hates it. Erik hates when there’re many people around. So he would wait for me in a café while my students are here to accompany me and to make sure that I’m alright.
Oh, excuse me, my phone… It’s Erik. Yes, darling. Jean is here. And Kurt, and Alex. Do you need the whole list? Yes, I’m alright. I’m sure. No, head’s not spinning. After ten minutes? No, we won’t be here for long but would you really call me every ten minutes…? Ah, the column is moving. Need to go. See you. Love you.
Look at my disability flag. It’s so nice.”
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Charles, “Oh, a man approached me a few minutes ago. He was wearing a robe so maybe he’s a priest. He said that I shouldn’t let the children bring me here. I can have my own will, even being disabled. Oh… And, according to him, I don’t have to worry so much that I can’t have kids by myself. God didn’t want me to if he allowed this to happen to me. Can’t have kids… What an irony that I and Erik are about to adopt our third child.”
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Charles, “Thank you for supporting me today. Do you like the café? One minute, darling. Where’s my camera? Dears. Hope you had fun with it. And don’t forget about the colloquium on Tuesday.”
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Charles, “Hello, guys! I only wanted to say that I’m so happy that my doctors and my children suggested starting a diary. I felt traumatized lately but now it’s much better. And actually, I enjoy talking on camera. It’s cathartic. I could try myself as a showman or an actor. What do you think? Well, I was on the news a few times. Maybe, you saw me there, on TV. It’s fine if you didn’t.
Ha-ha! Erik says that I sound American when I say, “Hello, guys!” And it’s dumb. Erik! People will put dislikes on my video now!”
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Charles, “So, friends, Erik advised me to explain because it’s not obvious who I am. I am not British. I don’t live in the UK. Though I may sound like it and I’m a tea lover, by the way. So you can suggest me some tea in the comments. I am from New York. I and Erik are Americans. Erik is a German Jew, actually. But I married him and provided him citizenship, ha-ha-ha!
Sorry, guys. If you knew Erik, you’d know that it was hilarious.
Though I am not British, I’ve been to the UK many times and I’m acquainted with its politics. So if you have some questions about the educational system there or human rights, you can ask me.”
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Charles, “Heading to Erik’s mum. It’s Shabbat today.“
Edie, “Er ist so dünn geworden. Erinnerst du dich an seine prallen Wangen?“
Charles, “What? What she’s saying?”
Erik, “That you lack weight. You lost your cheeks.”
Charles, “But I sit all the time. How can she see my cheeks?”
Erik, “Charles.”
Edie, “Ja, Charles sollte mehr essen. Schneide ihm ein größeres Stück ab, Erik."
Charles, “Oh, another schnitzel? Waaait.
By the way, it’s my Birthday today. I’m thirty four! Do you want to sing me Happy Birthday, in German? Zum Geburtstag viel Glück, zum Geburtstag viel Glück, zum Geburtstag, liebe Charles, zum Geburtstag viel Glück! Was it good? “Das gut,” Erik says. And Erik’s mum is grinning. I’m happy.
Look, friends, they are hugging. How much she loves her kleines kind…”
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Charles, “Erik’s mum gave us Stollen to take home. And twins are super excited about that. I’m very grateful to see that Erik’s mother supports him so much. I’m happy to have her on our side. Erik should get all possible help after what he’s been through. I mean, because of me…
I wasn’t paralyzed when we met. We were about to marry when I got into a car accident. My arms were paralyzed too for a few months. The sensitivity gradually returned, just as doctors told us. But before that, we tried to cling to the new routine, and Erik carried me around a lot— I felt how he was shivering. And he even hurt himself purposely a few times.
It got better with time. But then, a year before, we found out about my tumor and that it’s cancerous. I heard how he was crying. I mean, it’s fine… I just want to comfort him, always. And I’m so glad to see that his mum makes him feel good.
By the way, she’s told me recently that Erik liked German beer when he was in his late teens. Can you imagine that? I think it’s cute. I’d like to buy him some. If you’re a beer lover, can you give me suggestions?”
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Charles, “Dears, Erik told me that you might be interested in how I made my house accessible. Well, basically, Erik has arranged all these helpful devices for me. Because he is a sweetheart. Look at these metal rails on the stairs. I can use them to go to the second floor. I also have an elevator but the first way is faster. And I like to try different things.
Here is my bathtub. I can open the front wall and transfer myself easily, then close it back and start to pour water. It’s a TV, in front of the toilet, he-he—
And it’s a jacuzzi. Lovelies, if you have an opportunity, I highly suggest it to you. It helps me with my frequent migraines, and Erik likes to use it when he’s overwhelmed by his anger issues. He says it soothes him.
Okay, I’m in the bedroom and I don’t really have what to show here. But just look at this photo. Me and Erik at our wedding seven years ago. Erik is smiling, genuinely. With his mental issues, it’s so precious. He allowed me to talk about it, don’t worry. So yeah, I can give relationship advice here.”
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Charles, “I’m watching a documentary and drinking a cocktail while Erik is massaging my feet. Life is good.
I thought we could make a Q&A video so I would know what interests you the most. What do you think? I hope somebody would ask how I keep things spicy in bed.”
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Charles, “Good morning! It’s the second day of my vlog! I’m feeling good so I’m about to go to the gym with Erik. But before that, I’m taking my pills. Most of them are painkillers. Ow… Good morning, honey. Is everything alright? Daddy is okay, don’t worry.”
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Charles, “It was Wanda. She’s six years old. I wasn’t wearing my wig. She’s always scared to see me bald for some reason. She thinks that I am in pain when I’m bald.
Hello, Wanda. You see, I’m with hair again. And I am feeling good. Erik can make pancakes with strawberry jam for you if you want to. Let’s play? Or watch a cartoon?”
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Charles, “The twins are at daycare and I’m at the gym with Erik. I had been trying gyms specifically for people with special needs for some time. Then, I decided that I don’t need them. The assistants in those gyms were very helpful and educated, but I discovered that I actually don’t need special care at a gym. I have Erik if anything.
I’ll show you how I exercise. I basically do the same that Erik does but choose only seated equipment, obviously. Here, I’ve warmed up my arms — let’s try the barbell.
I remember that time when I only began to exercise in the gyms as a person with paraplegia. I’m wheeling inside and everybody rushes to help. And Erik isn’t jealous at all. Ow, sorry for using you as a background, darling. You’re just so sexy. I’ll cut it.”
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Charles, “It’s my school. I named it “School for gifted” but I encourage everybody to come. I need you and I care about you, whether you have an X-gene or not. And I understand that you may have circumstances that prevent you from reaching out, physically. So you can just message me, my friend. I read all letters. I give my email in the description box below. Write me whether you’re feeling alright, or you would like to get mental support, or money. I’m here for you and I’d do my best to understand you and to accept you just the way you are.”
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Charles, “Okay, it’s time to meet Raven.”
Raven, “Hey, guys!”
Erik, “You’re the same…”
Charles, “Come on, darling, it’s just a vlog. It brings so much fun!
Look into the mirror you two. We’re such a good family. Wait, I can activate one interesting function on my wheelchair. It’s the power chair. Look, the seat rises and the chair slowly changes its form and makes me stand up. I’m like a transformer. It’s good for my muscles, to change position sometimes. And look, I’m so tall. So tall.”
Raven, “Erik, you look really nice. So fit. Unlike you, Charles. Why’re you fat? Are you pregnant?”
Charles, “Oh, Erik’s mum should hear that.”
Raven, “Joking. How are you? Thank you for telling me about the tumor.”
Charles, “Of course. I’m fine, thank you. My head aches every day, at certain hours. It’s annoying but I suffered from it before. I’m used to it, kind of. It’s not unbearable.”
Raven, “Okay. Did you hear that Logan is in the city?”
Charles, “Yeah. I called him and asked to come over. He said he would, for a minute.”
Erik, “You didn’t warn me.”
Charles, “Oh, yes. It would be only a minute but I’d manage to wink at Logan, to show him how I’m licking my lips, to smile at him like a flirty thing—”
Erik, “I’m leaving, Charles.”
Charles, “Erik, are you mad…?”
Charles, “Okay, the argument is over. It’s okay. We’re just chilling.”
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Raven, “Oh, look, Logan’s befriending Erik. Hugging him by the waist. Keep calm, Charles, keep calm. Don’t burst.”
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Erik, “Stop fussing with your camera, Charles. Enough.”
Charles, “Why? I’m not filming you. Are you stressed out?”
Erik, “Sure. We are walking in the city. Finally, finally. The car…”
Charles, “I enjoy being around people.”
Erik, “I know. But they are loud. They are moving. They are always in the way and they can’t stop talking nonsense. I can’t stand being somewhere near them. Hate them. They make me aggressive.”
Charles, “Okay. Thank you for your opinion.”
Erik, “You’re welcome.”
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Charles, “Erik is driving us home. And he said he’d cook us dinner. Because he’s a sweetheart.
I wanted to say that I think this vlog is going to be too long. My son Peter is only six years old but he already gives me plenty of useful advice.”
Erik, “Charles, I asked you.”
Charles, “Oh, yes, Erik says that I shouldn’t film kids. Peter avoids the camera anyway. But Wanda told she wants to be in the film. She wants to be a star and we can do nothing about that. She promised to show what she can do with her power, for the camera. I can’t say no to her.
I’m really sorry for all the babbling, guys. I don’t have a solid conception of my vlog yet. On which topics should I concentrate? Write me in the comments, please. Maybe, I would make a quiz. Or I would divide the topics that I’ve already figured out and cover just one in each vlog. So they would be more dynamic, focused, and informative.”
Erik, “That’s right, Charles. Less performance, more use.”
Charles, “Thank you, darling. Also, I think I should script my videos. And I would like it. I like to plan, to script.
My vlog should already be about an hour long. That’s bananas. I’m sorry, I just heard how people on YouTube say “Bananas”. It’s so funny. I could also promise that the next vlog would be less chatty, no cap. Because I know that “no cap” is a term from TikTok that means “no lie”. I love talking to my students so I know the news. Oh, they even said they would like to help me with my vlog. I’m so glad.”
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Charles, “Good morning, friends! I didn’t film yesterday because I was feeling unwell. Actually, I made a clip of myself lying in bed and going through excruciating headache and nausea. I wanted to describe my feelings for you, dears, and for science, but Erik told me to put the camera away and rest. So I was napping the whole day.
Today I’m better. And I am happy about it because today is a great day. Sorry for not warning you. I was so excited that I didn’t even know how to express it. We are going to an orphanage today. Yes, we are going to adopt a baby! Today!”
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Charles, “I was so full of emotions that I couldn’t film. We had been planning the adoption for a long time. Our twins are six years old and we have missed the feeling of having a baby so much. We wanted to care for someone again, to hold a little body in our hands, to cradle, feed him, change his clothes and bathe him. We love it.
But the twins, when we took them, they were more grown-up. They were about one year old, right, Erik?”
Erik, “One year and two months.”
Charles, “And our new baby, David, he is only one month old!
We were researching information about baby care for some time, to prepare ourselves. It was a pleasant thing to do before falling asleep. We enjoyed it.
I have to control my breathing. David is so tiny! Our hands were trembling when we took him for the first time. We could barely say anything. And at home, when we brought him, you should’ve seen the reaction of the twins. They were ecstatic!
Our baby boy is now sleeping in his crib, in our bedroom. How are you, sweetie? How are you?”
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Charles, “I am actually not an ordinary parent. I am a disabled parent. It’s a different level of responsibility and I’m taking it to account. Write me in the comments if you are interested in this topic, guys. Because I know that there is quite a lot of information about the upbringing of a disabled child. But I couldn’t find anything sufficient for a disabled caregiver.
Though, it wasn’t really hard for me as a wheelchair user. I remember that I could take both twins on my lap and spin with them. They enjoyed it. My brain tumor means that I have to be more cautious now. It’s quite aggressive so I can get a seizure anytime. And if I get it suddenly, I can drop the baby. So we decided that I would take David only under Erik’s supervision.
I wouldn’t make it myself. I doubt that I would adopt if I was a loner. There’d be too many fears. But I know that Erik loves kids. He enjoys being a father. It’s fulfilling for him. So I’m glad to be here and share his happiness. We realize that most likely I won’t see David as an adult, but it’s important to cherish our present experience. I feel good, knowing that Erik would take care of the kids if I’m gone.
And even considering that our situation is so complicated, Erik said he wants to raise as many children with me as we’d only manage. Because it’s our mutual experience. Part of me would remain in them. They would remind Erik of me and our relationship. It’s nice.”
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Charles, “Good morning, friends. It’s another splendid day, so fresh and sunny for us. Erik left for his job and I have Jean here. She kindly offered to help me to look after David while our nanny has a day off.
I don’t go to school anymore, not physically. My health condition means that I often suffer from fatigue, nausea, and migraines. My exhausting working schedule triggers all the symptoms so Erik gets evil if I don’t stay at home and rest.
I work from my computer. I have a two hours lection with my students today. And I’m sure I would enjoy it. Teaching doesn’t give me headaches. And I still can concentrate quite easily, despite the tumor. Maybe, it’s because my brain is trained like that, to exercise regularly. And I love my students. Communicating with them heals me from all the pains. No, I’m not trying to earn your likes!
Now I’m going to speed up the video and put some music, so you might feel motivated to study with me. Come on, let’s study together! Your age doesn’t matter!”
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Charles, “Erik is massaging my feet. It’s very pleasant. I mean, I don’t feel his hands on me but the sight is very lovely.
Erik is a mutant, by the way. And me too. I am a telepath and he is a metallokinetic. The term for his mutation sounds more exciting, right? It’s sexy. And it’s a very rare ability. Erik is precious. Each of you is precious, friends. Remember it. What was I about to say…?
Oh, yes. Erik is able to run electricity through my muscles. Sometimes he sends the impulses into my legs and into my spine. Well, my doctors don’t find it harmful and I like the feeling. It’s stimulating. And it should look cinematic when he hits the damaged tissues inside my back and I start to shake a little. The stream is weak, though, because we shouldn’t hurt my heart. And Erik was training a lot. So, guys, it’s just me sharing my routine. If you also can control electricity, please, don’t do what Erik does by yourself. Such practice needs supervision, necessarily. Okay?
I also like when Erik pierces my back with needles. His power is very diverse. I hold my breath sometimes when I try to comprehend how much Erik is actually able to feel and do.”
Erik, “I would’ve not developed in this way, without you.”
Charles, “Yeah, finding the balance between the rage and serenity was a nice thing. But about the needles. Erik passed an acupuncture course, for me. Because we wanted to try everything able to lessen my discomfort. So Erik is educated and he’s even got a certificate. The same thing, friends. Don’t use the needles on yourself if you weren’t instructed by a certified professional. Please.”
Erik, “Don’t be so overcaring, Charles.”
Charles, “Why not? I’d like to also address disabled people. It feels very nice when you share such a routine with your partner as we do with Erik. We join our efforts to help my body release tension. And it’s an intimate experience. We spend more time together thanks to my disability, right?”
Erik, “Yes. We usually manage to watch the whole episode of “Star Trek” while you’re shitting.”
Charles, “That… was hilarious. Ow, David woke up. He probably wants to lay here with us.”
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Charles, “Hi. I’m sorry that my vlog has lost its consistency. The last video I made was three days ago, I guess. I was feeling exhausted and in pain, and my spine hurt so much that I couldn’t raise from the bed. So I filmed a minute of me lying there and just looking into the camera. That’s all I could do.
Well, Erik was close. You didn’t see him on the video but he came when he could, lay at my side, and pet me. It helps me very much: his touches, the snuggles, the kind words, and when he tells he loves me and that he’s sorry that I’m in so much pain. Oh, sorry, friends. I won’t cry here, don’t worry. But if you would like to leave my video now and go watch something relaxing and funny, please, do it. I won’t be hurt. I don’t want to upset anyone.
And anyway, I’m happy. I suffer only from physical pain. I don’t take any antidepressants. Erik, and my kids, and my students are here. That’s all I could desire in life.”
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Charles, “My back gave me a little break so I can wheel around a bit. Though, the headache doesn’t let me rest even when I’m lying. But I can think clearly and I’m not slurring, right? Just barely.
I wanted to talk more about my brain tumor. You might be interested in how I found out about it. I had terrible back pain for a while. The massages and painkillers didn’t help much so Erik drove me to a hospital, to do scans. They didn’t find anything in my spine, except for the injury we were aware of. So they wanted to let me go but Erik insisted on checking my head. That’s how they located the tumor.
It was near my temple, cancerous but very small. My body was severely dehydrated because of the tumor so the nurses put tubes into me and filled me with water. Then, I felt that I could focus and talk normally, and the pain lessened immediately.
The tumor had been stable for about a year before it started to slowly increase. It’s set in a very sensitive part of the brain so they can’t cut it off, only with the huge risk of affecting my brain. Well, I had radiotherapy and chemotherapy, which gave me another year of remission. The doctors said I may repeat the course, but as far we don’t know if my body would be able to handle it.
The last chemotherapy affected my immune system so badly that my hair never started to grow. I’m wearing a wig.
Well, don’t worry so much, friends. Diseases and death are just what we have. Each of us can relate to it. It’s fine. Erik said he’s happy and grateful that he got to know me. He’ll keep me in his heart. I feel the same. We are very privileged to have each other. Many people don’t find their beloved ones. But we were that fortunate. Now, if I am about to leave, Erik would help me. And our kids would make him happy, after. It’s fine. Everything goes as it should.”
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Charles, “Talking about being privileged. I had an opportunity to treat my cancer. It’s not only about living longer but also about increasing the quality of life, about spearing a person from pain. Nobody should be in pain. But the treatment is very expensive, so if you’re interested, I’ll leave the links under the video so you can get more information and donate to the organizations or directly to the people who need help. We all are here to help each other.
I have resources for giving donations so I will, of course. But if you don’t have an opportunity, or if you feel that it would make you uncomfortable, don’t worry. You already do as much as you can. You’re watching my video and getting educated. You’re already helping.
Hey, Peter. Going outside to play with Wanda? How’s David? Oh, okay. I’m doing okay, thank you. Bye. I love you.
Peter feels protective over David. It’s so funny. He was asking for a younger brother by the way. I’m happy for him.
Peter and Wanda are six years old. We told them that their daddy is ill and the illness might take him away. I know that they can’t yet understand what death means so I didn’t tell them anything else. I would like to know if there is some other way in which I could communicate with them and explain what may happen, and comfort them. I guess it’s a bit harder when you are not religious. If you have some advice, friends, please, write them in the comments. I appreciate everything.
They are scared to see me tired, pale, or lying in bed the whole day. I’m so sorry. I try to explain to them that physical pain it’s alright and I can be happy despite it, and that they do everything they can for me. If I see them calm and cheerful, it’s the best remedy. I really don’t want them to grow up faster than they should. They are my angels.”
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Charles, “I’ve taken so many painkillers but the pain is still there— Thank you, Erik. Erik knows that I am like a cat. I love being caressed. It helps when you hold me. Touches lessen the pain. It’s all you can do, darling, and it’s totally enough. Thank you for being here for me.”
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Charles, “Well, after two days, I’m feeling better. Really. And I feel that it’s time to wrap up this vlog and begin the new one. Hank is about to come and help me with the montage.
There’s one more thing I would like to address, just now, in my first vlog. Friends… You shouldn’t watch it if the content upsets you. I would continue talking about my cancer because I think it’s important, but you shouldn’t force yourself to watch it. You shouldn’t be there for me because I’m dying. Not if it hurts you. If you’ve already given me your love and now you would like to click out, do it. You have the full right to go and enjoy your life, without being burdened. I totally support you in that.”
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Charles, “Alright. We just had a discussion with Erik. There was always an option besides radio and chemotherapy. A surgery. The risk is high but they still can do it. They would cut off the tumor and it should prolong my life. It can prolong my life sufficiently but with the risk of memory loss, intellectual degradation, and chronic pain.
We finally talked it over, thoroughly. And we would try. I mean, we don’t really know if we can meet in another world. So I want to stay with Erik here for as long as it’s possible. Even if it would mean a constant excruciating pain for me. I want to see Erik. To feel him close. Even if it would mean becoming his fourth baby. He said that it’d be alright for him. He would leave his job, take my money, and care for me full time. I hope it would work for us. Anyway, while there’s life, there’s hope.
Okay, it’s time to say bye for now. Though, I don’t want to. I love you, friends, and I wish to see you in my next vlog.
Erik said he will dislike my video. But don’t listen to him. Don’t like my video because you are glad that I have cancer. Like it to show your compassion and support.
Well, how do they say it here— Thank you for watching. Click the like button and subscribe to my channel. I’ll see you in my next video."
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Charles, “At the end, I would like to put footage of Wanda playing with the lights. Do you see it? Isn’t it splendid?
If you are gifted like Wanda, I would be happy to welcome you to my school. And if you are a human who is curious and wants to be friends with mutants, I would be thrilled to include you into the program, my friend.”